Why do they have to say fibromyalgia and ME are only suspected.why do GPs have to remind u there are no tests to confirm it!at my Gp surgery today I met again with that terrible gp i saw after making a complaint him (the GP I mentioned in my last blog!)he said i have self diagnosed, well the above chronic illnesses have not been diagnosed by me a consultant said that.i am sick of fighting to make people believe how I feel.when I went through the letter written by the GP to me .the GP still fid not listen.he even got tongue tied and begged the practise manager to agree with him.today i had witnesses who saw the same behaviour i had before from this GP .his behaviour was still so unacceptable the practice manager had to end the meeting.due to the drs attitude.through some miracle i stayed calm and polite.it is only when my husband got upset that i started to get tearful,that says it all.my closing comment to the dr was how would he feel if someone spoke to his children how he has spoken to me!he couldn't even say I word!it is days like today that u feel like giving up!
Ahhhh GPS: Why do they have to say... - Fibromyalgia Acti...
Ahhhh GPS
Just wiped off my reply to you, well here goes again.
It took me years to finally get diagnosed with fibro and CFS, and being humiliated and more or less told i was making it all up. When i finally did (pain management at hospital diagnosed it) I thought at last someone believes me! They were very helpful and told me to take pain killers regularly and not to wait until pain had kicked in, and also to pace myself when doing anything.
My GP referred me back to rheumatolgy for my arthritis, only to be told that in his own personal opinion Fibro there was no such illness, well i challenged him, in a nice way and told him I know my body and how painful and debilitating an illness it is, but he still wouldn' agree about fibro, anyway i have to go back in February and I shall write a daily diary of how it affects me, gather as much written information and hand it to him, and just hope he will read it.
Then on top of this i have been having bladder problems (blood in urine) and all the pain that goes with a UTI and so i saw a doctor in urology, had a cystoscooy which thankfully showed no problems with my bladder. I asked him if he thought it could be linked to fibro and he said in a tone i didn't like "Oh No not THAT fibro again, and he also said other things which were very rude to me. I cried the whole way home on the bus
The next day i phoned PALS ( it is when you want to make a complaint about your hospital) and reported him, and the girl who i spoke to agreed with me that he should never have said the things he said to me or spoke to me in such a way and i should hear back from them in a few weeks.
SO YOU MUSTN't allow your GP to speak to you the way he spoke to you, after all we are human beings.
Could you change your GP surgery and then you won't ever have to see MR NASTY.Or make another complaint about him, you are not a trouble maker, but you have to stand up against these NHS bullies.
I live alone, and have no-one to support me so that is why I contacted PALS.
I wish you good luck, and genuinely hope you get a doctor who will listen and be sympathetic towards you. Please keep me posted.
Gentle Hugs
Bonnie Lass
Oh and i bet these doctors aren't awake all night in pain ( i have been awake since 10.30 again) so depressing
its really horrible to wish your symptoms on someone else, but i have often wished that just for a couple of days, the doctors could experience such varied and vile symptoms that come with fibro. i was initially told it was M.E, but one day whilst visiting a rather horrible doctor. (the only one i could see), she threw her arms in the air, shrugged her shoulders, and said. "if M.E really exists or not, i dont really care!" i left the surgery feeling so humiliated and nearly in tears. i have since decided that ANYONE who dare says such things to me, will get the reply " its a shame some people in this world are so ignorant" that soon shuts them up!
also, bonnielass, i have had bladder problems, and had investigations with blood in my urine etc. all the symptoms of a bladder infection with normal results. eventually they put a camera (or attempted to) up my urethra to look in my bladder. it was too narrow to fit so i had to go back under a general and have a urethral dialation. turns out that that was the problem! my flow increased and the problem resolved! that was in 2005, and i had it repeated this year when the symptoms started again, and all is great again! just a simple personal question. do u pee like a water pistol?! i did, but now i have a proper flow!! xx
Hi Lindylou69,
Yes if you mean wee seems to be coming from somewhere other than the bladder, or i pee about 20 times a day
Bonnie Lass
Telescope them from now on. There's a scan called fmri scan that one detects fibromyalgia and is no longer a myth or in your head .
Hi this sounds interesting,is this available in the UK do you know??,is there a link i could have a look at,with more details?Thanks Whiterabbit,good info
Lol it should say tell them not telescope , sorry
one dr i saw wqa shorrible and the only comment that came from his mouth wa s"its all in your mind".complained to practice manager who said "i didnt think he was like that"dont know if he was dealt with.my own Dr has been very good up until teh summerwhen i saw him with various problems including my ever increasing abdomen and was told that the scans i had back in january were clear therefore any new symptons i ahd were not recognised.my
abdomen was getting bigger and i now had sore and painful lumps in my abdomen and pressure pain all around my ribs.no one would give ,me any answers.as i wa snt getting any answers i turned to the internet to find out what lumps could be -dercums disease (something dr s dont knwo about as it is not in text books etc) dr said not heard of it.tehn at alater appt more or less shuted at me "you dont have dercums it is fibromyalgia "/since then he wont listen to anythign i tellhim.i have no ide awhat my notes say and wondre just what this Dr has said about me.i bet they dont say taht he shouted at me and how rude he wa sto me.
i have come home onteh bus many times in tears cos noone is listenign to me.
i cannot chanage drs as there is no otehr practice i can go to.
Hi Anbuma, the problems we have as sufferers is the fact that is is hard to get someone to listen. A lot of docots these days are not happy that patients get so desperate for answers that they turn to the internet for help. Some doctors see this as us doing there job and in some cases we need to. But there are people out there that get addicted to the internet solely for the purpose of diagnosing an illness and each time one illness is disproved they go looking for the next possibility. I am not saying you have done that at all so do not take it the wrong way, but there are people out there who do it. My own mother has been a hyperchondriac all her life and I dread what she would do if she had any idea of how to get online. And this is what some docotrs think. They think if we are looking online for answers then we ALL must be hyperchondriacs, and this is just not the case. If you are in any way concerned about it g to A&E. from what I know about Dercums Disease it can effect different parts of the body and Iknow it is fatty lumps putting pressure on the nerves which can of course give all the same symptoms as fibromyalgia hence Fibro gets the blame. How do I know this, well I have developed fatty lumps in my lower back either side of my spine and they get very painful for months on end. When it causes problems it causes problems. I had no idea what the fatty lumps were and I had scans to check them out. I had never heard of Dercums until I got my results and it was only then I was told what was suspected. Yes I have these lumps and I have a couple more come up on my arms too which get painful, but it not something I ever worry about. It is not Dercums for me but if you are concerned request to see someone somewhere else. Good luck with it xxxxxx
I was four years before being diagnosed so I have had it 26 now. The problem I sometimes have with any GP other than my usual GP is they blame everything on the Fibro rather than looking outside the box. My GP does not do that. He tests for things first and if that shows nothing then say it is the Fibro. For you it is just trying to get a diagnoses. You should ask to be referred to or back to rheumatology where they can test all your pressure points etc and take it from there. It is going round in circles, I know as I have been there, but eventually the rheumy will get to the bottom of it. Hang in there hun xxxxx
Hi everyone thanks for all ur comments.it is shocking really to hear the problems we all face.the thing for me is the rheumatologist has said he suspects fibro and ME in his letter and because of that he says it is not confirmed.however I did go to the pain clinic and the confirmed fibro.but again that dr feels that it is only the rheumatologist wording that counts.that is why it is even more frustrating.
